“Ethically, I believe that emancipatory work and social justice should be at the heart of everything we are doing – and that goes for people outside and inside the academy.”

Now that I’ve finished my fieldwork, the focus of this blog is going to change. I’m going to talk more about what it’s like to be doing a PhD with multiple impairments. I also want to ponder the personal impact that postgraduate studies can have on your life in general, particularly if you’re disabled, but not just then*.

An interestingly high number of the PhD students that I follow on twitter and Facebook have been sharing this post. It cites research showing that PhD students are experiencing mental health issues, contemplating suicide, dealing with imposter syndorome, and assuming that this is just ‘how things are’. Thinking that they should suck it up and destroy themselves in the attempting at getting a PhD.

I think that the cruelty inherent in (some of) the process of getting a PhD is appalling. Anyone who thinks I’m being hyperbolic here, probably doesn’t know me very well. I’ve said before that the symbolic violence inflicted on disabled PhD students is problematic. But it’s not just those who define as disabled who are impacted. We at least have some (limited and decreasing) support, if only in principle. But people who are developing mental health problems as a result of their PhD programmes may feel entirely alone. They may think that the problem is them, as individuals – that they need to work harder, put more hours in, be less sensitive… and so get into a vicious cycle where mental health problems have room to flourish.

Photo: a diary page showing too many appointments and with ‘stress’ written in big red letters. Photo by Alisa Ryan (flickr, CC).

And the response to this is so often individualised. The idea that people who can’t ‘hack’ academia aren’t strong enough. The idea that the way things are done now is necessarily the best way, because it’s the way things have always been done. The idea that you should just give up if you find it too difficult. After all, there are hundreds of people in the queue behind you who will take your university place, and there are so few jobs that you need to take every opportunity you can get. Right?

I was supposed to go to the launch of the Goldsmiths Disability Research Centre last week. It’s nearly winter, and one of my chronic conditions is flaring up in response to the cold, as often happens. I came really close to dragging myself out to the event, even though I couldn’t stand up and the room was spinning. I was that worried about the opportunities I could be missing. The nightmare scenario flashes before your eyes: You’re going to miss the networking connection that could have helped you hear about the postdoc that you will now never have the opportunity to apply for, which means you will never get a job. You know you’re already disadvantaged compared to students with more energy and more time (because they don’t have to spend time recovering), who can teach and organise conferences and go to events. You can’t fall behind them any further… or you’ll drop off the map altogether…

And that’s all before I start talking about my actual PhD work and how that affects me!

I missed the event, in the end. I realised that I was highly unlikely to contribute anything positive to it, in the state that I was in, and that I was continuing to damage my health by soldiering on. I’m currently working from bed, attempting to restructure my life so I can do as much work as possible without further impact on my health. But that’s ultimately impossible, in a PhD programme, of course.

Here’s the secret we’re not telling each other, but that we probably already know. This situation is structural, not personal. You’re probably not the reason you might be falling behind or missing opportunities or not quite reaching expectations. The system is the problem, at least for the most part. It’s not just the overt sources of stress: the deadlines and the word counts and the data wrangling and the research participants and the reading and the teaching and the looming threat of the evil viva. It’s the covert expectations: the lack of job opportunities, the many things you’re supposed to achieve during your PhD studies, the need to be able to defend your work coherently at any moment in any setting (lots of fun for us autistic students), and the subtly-communicated pressure of having to perform at an incredibly high standard all the time…

Ethically, I believe that emancipatory work and social justice should be at the heart of everything we are doing – and that goes for people outside and inside the academy. As the great Colin Barnes once said to me (as I’ve no doubt quoted before): Why are we sociologists, if not to make a difference in society? I could rephrase and turn it around: Why are we academics, if we’re just here to bolster the practices that privilege a certain kind of researcher and ensure that the majority who don’t have those privileges can’t survive in academia, no matter how talented they are? The academic traditions that I work within are focused on emancipation and social justice. Emancipatory disability research. Feminist standpoint research. Postcolonial theory and research. But we shouldn’t just talk about this stuff. We should live it.

And I’m a part of that. I need to live it — by protesting the aspects of academia that cause me harm. Not just for me, but for all the marginalised students and academics I work with, and people who will be in this position in the future. Bourdieu’s concept of symbolic violence states that it happens with the complicity of those on whom it is inflicted. That means we allow it to happen to us. Every time I refuse to protest when a teacher doesn’t give me enough processing time to communicate my research properly, I allow it to happen. Every time I’m too embarrassed to say that I’m finding something difficult for autism-related reasons, I allow it to happen. Every time I’d rather sleep on a desk in an empty classroom than reschedule a meeting (for fear of looking weak or missing academic opportunities), I allow it to happen. I allow it to happen to all of us.

A stress cycle (that I’m very familar with). Text: I become stressed –> I get stressed about being stressed –> I do nothing –> I break down –> I become stressed… Photo: seaternity (flickr, CC).

I want to stop allowing the marginalisation of students from all backgrounds who are suffering because of the PhD system and how it is structured. Will you help me?

I’ve set up a Slack channel this week for disabled PhD students and and PhDs working in disability studies.** I think the two things are closely related, and that we should get together. We all need a lot more opportunities to support each other, properly. Not in a vague, ‘aww, poor you’ sense. But in the sense of supporting each other’s activism, on our own behalf and with others, to dismantle some of the structures that cause us this kind of stress. Helping each other not just to accept that this is ‘how it is’. Supporting each other in not allowing this to happen.

I have no idea what ‘not allowing this to happen’ would look like, by the way. I don’t know if we should be fighting on a more individual-level, sticking-plaster way, e.g. for better funding for mental health services, or for bigger changes to the entire structure of the PhD. But I think we’re doing a lot of things on our own that we could bring together into more coherent, more useful approaches to the problem. We could be doing this in all kinds of forums and settings.

Any ideas?

*A ‘part 2’ on this topic will follow, because I recently realised that I started (and nearly finished) a whole long post on accessibility and academia a while ago, and never posted it. So consider this the basics, relevant to everyone, and I’ll follow with the stuff that’s relevant to disabled PhD students. And sorry for my long-windedness.

**Tweet/PM me if you want to join the Slack channel, or leave me a message here with a way that I can contact you.